TriangleHEALTH PROFESSIONAL · SOURCE READING
Long-term follow-up programs
Source: Late Effects of Treatment for Childhood Cancer (PDQ®)–Health Professional Version, National Cancer Institute.
Source updated: April 14, 2025 · Captured 2026-09-09.
Selected source text with whitespace normalised. This Triangle page is not an NCI PDQ summary.
Transition of care from the pediatric to adult health care setting is necessary for most childhood cancer survivors in the United States.
When available, multidisciplinary long-term follow-up programs in the pediatric cancer center work collaboratively with community physicians to provide care for childhood cancer survivors. This type of shared care has been proposed as the optimal model to facilitate coordination between the cancer center oncology team and community physician groups providing survivor care.[70]
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An essential service of long-term follow-up programs is the organization of an individualized survivorship care plan that includes the following:
Details about therapeutic interventions undertaken for childhood cancer and their potential health risks (e.g., chemotherapy type and cumulative dose, radiation treatment fields and dose, surgical procedures, blood product transfusions, and HSCT).
Personalized health screening recommendations.
Information about lifestyle factors that modify risks.
A CCSS investigation that evaluated perceptions of future health and cancer risk highlighted the importance of continuing education of survivors during long-term follow-up evaluations. A substantial subgroup of adult survivors reported a lack of concern about future health (24%) and subsequent cancer risks (35%), even after exposure to treatments associated with increased risks. These findings present concerns that survivors may be less likely to engage in beneficial screenings and risk-reduction activities.[71]
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The CCSS evaluated the surveillance and screening practices of 11,337 childhood cancer survivors. They found that fewer than half of high-risk survivors at increased risk of developing SMNs or cardiac dysfunction received the recommended surveillance, which likely exposes them to preventable morbidity and mortality.[59]
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27% of survivors and 20% of primary care providers (PCP) had a survivorship care plan. Survivors treated after 1990 were more likely to have a survivorship care plan.
Survivorship care plan possession by high-risk survivors was associated with increased adherence to COG-recommended breast (22% vs. 8%), skin (35% vs. 23%), and cardiac (67% vs. 33%) surveillance. PCP survivorship care plan possession was associated with increased adherence to skin surveillance (40% vs. 23%).
Among high-risk survivors, adherence increased for colorectal (14% to 41%, P < .001) and cardiac (22% to 38%, P < .001) surveillance and decreased for breast surveillance (38% to 13%, P < .001) between 2007 and 2016.
For average-risk survivors, better adherence to American Cancer Society recommendations for breast (57%), cervical (84%), and colorectal (69%) screening was observed than with COG recommendations. PCP survivorship care plan possession was associated with increased adherence to breast and colorectal screening. Survivors were less adherent to breast screening than the general population and less adherent to cervical screening than siblings.
For survivors who have not been provided with this information, the COG offers a template that can be used by survivors to organize a personal treatment summary. For more information, see the COG Survivorship Guidelines, Appendix 1.
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Preserved source evidence · Not medical advice